We have a grandson, who is now 7½ years old. We did not think he would make that age!
He was born with cerebral palsy and also, discovered later, epilepsy.
He is also quadriplegic, has no swallow reflex and is also unable to cough.
He needs constant care 24 hours a day, 7 days a week, 52 weeks of the year.
TJ is a lovely boy, he has beautiful, dark, expressive eyes and smiles a lot in spite of his ‘lot’ not being a happy one.
His mother has done a wonderful job of caring for him as any loving mother would.
The second week of December he had to go into hospital for a routine ‘intervention’.
Due to his growing he needed his ‘gastro’ site moved.
Simplified, the tube into his abdomen through which he gets all his nourishment and medication was not up to scratch and needed to be moved.
The operation went well, but, the ‘tube’ put into his throat to help his breathing throughout the procedure caused a problem. He ended up with an infection in his upper airway, and bearing in mind he can not readily cough, fluid collected on his lungs. His stomach also herniated up past his diaphragm…..
Poor little chap then had to have another ‘intervention’ to alleviate this problem and was put into ITU with one to one care.
He seemed to be progressing well and was put back onto his ward where he promptly picked up an infection and was transferred back to ITU.
It then appears that the original surgical procedure caused adhesions which had to be sorted out and then he started to develop fluid in his abdomen as well.
It is almost 5 weeks since he went in for a simple procedure.
Our daughter and her estranged husband have been at their wits end with the worry of it all.
She lives a good 90 mins travelling time from the hospital and it is taking a toll on her financially as well as physically and mentally, she also has two other children to consider.
We are been out here knowing that if we were in the UK there would be little we could do to help. It is all down to the medical profession and their expertise. We have daily phone-calls with our daughter, being sounding boards and giving constant love and encouragement. It is heartbreaking… and I pray a lot.
Oh, Trisha, this must be so very hard on all of you, especially his parents. I'm a pray-er too and will add TJ and his family to my prayers.
ReplyDeletePoor young chap, and poor parents and grandparents....but I do not understand how regular procedures end up going so wrong...and picking up an infection in a hospital is beyond the pale.
ReplyDeleteThank goodness you are there for your daughter...going through it alone can be dreadful.
Thank you Perpetua, you join many others with their prayers for TJ.
ReplyDeleteIt has not been a good few weeks, what with moving etc. also having the lad on our minds as well.. He seems to have 'turned the corner' and it is hopeful that he will be transferred to a hospital local to his family in the next few days..
As for the procedures going t*ts up, well I cannot understand it either as he is in one of London's top teaching hospitals and his care has been exemplary. He is a fragile little chap who has survived against the odds - a little fighter.
Trisha, my nurse sister tells me that when someone is as fragile and vulnerable as TJ, with much lowered resistance, it is almost impossible to prevent all infection unless they are completely isolated (like the 'child in a bubble' we sometimes read about). Apparently germs we would shrug off when well can cause problems when we are in this weakened state. Prayers are continuing and please do keep us posted.
ReplyDeleteI have added TJ to my prayer list as well. What a brave little chap he is and how brave his family, too...
ReplyDeleteThank you so much for your prayers.
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